Having another bash at histamine issues... - Thyroid UK

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Having another bash at histamine issues...

TiggerMe profile image
TiggerMeAmbassador
48 Replies

I've been on an upward trajectory this year, digestion has been much more robust too... thought I might re-visit tackling my histamine avoidance to hopefully be able to add more things back into my diet

I've tried in the past with DAO/ digestive enzymes without much success so have just been avoiding the trigger foods

Bit hesitant... if it goes badly it's like I've been poisoned and causes nausea and a monster, wired, migraine that lasts a few days 🤢

I notice Ancestral Supplements Bovine Kidney are on offer at the moment and wondered if it was worth a trial?? Any takers...

Equally if you think I'm better off not dabbling and just living with it I'm up for that option too 😁

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48 Replies
arTistapple profile image
arTistapple

I would be tempted to allow more healing to take place with your thyroid regime. Why? Because according to some ‘old timers’ on the Forum, once the sweet spot is found, healing continues for a good period of time. As I get more used to what I hear on the Forum, unfortunately there are rather less people, it seems to me than I would like, who actually talk about being what they would consider, ‘well’. At first it’s ‘the magic bullet’ stories which are attractive (reasonably enough) but many still seem to have to live with restrictions.

However the ‘well’ people may move on, not needing the Forum as much as before. Getting on with their lives! At first we are keen to move on fast. This can precipitate mistakes. However I take the view, I learn a lot from those mistakes too.

For me, having been ill for so long, I can’t tell what is perhaps down to the normal aging process or the hypothyroidism - more confusing because I definitely have not reached anything like a ‘sweet spot’.

These things you want to tackle will still be there, in say three months. Enjoy your trajectory for a while.

No problem asking for more knowledge (like you just have) but you could turn it all over in your mind for a bit, before embarking on any trying and testing,

Bertwills profile image
Bertwills

Must admit I thought I’d be a perfect candidate for a low histamine diet & DAO to improve but after spending quite a lot & giving up favourite foods, no notiveable improvement really. It’s very confusing though with so many suggested solutions to digestive problems etc. How to know which way to turn? Hope it helps if you try it. Lots of label reading again. ☹️

TiggerMe profile image
TiggerMeAmbassador in reply toBertwills

 Thanks both 🤗 arTistapple Hmm... yes I'm wondering whether to just stick with what works for me, in all honesty my intolerances are more of an issue for other people than they are for me as I'm seen as hard to accommodate🤷‍♀️... I'm happy sticking with a 'safe' diet without the expense of more supplements and fear of rocking the boat 🫤

Normal is overrated anyhow 😁

arTistapple profile image
arTistapple in reply toTiggerMe

“… my intolerances are more of an issue for other people ……”. Yes we have had enough of that, have we not?

RedApple profile image
RedAppleAdministrator

I looked at those kidney supps a long time ago, but was put off by the price and need to take six capsules a day. Also, some not great reviews on Amazon. If it was a case of taking them for a shortish period of time and histamine intolerance would be magically and permanently cured, I'd re-consider. But I'm not aware of any convincing evidence on that.

TiggerMe profile image
TiggerMeAmbassador in reply toRedApple

I'm thinking that's the conclusion I have come too in the past... genetically I'm supposedly ok with DAO production but something has obviously knocked that out of whack, much as it has with my dairy intolerance since starting on Levo....

Yeah, I'll save my money and continue to accept my quirks 🙂

RedApple profile image
RedAppleAdministrator in reply toTiggerMe

My theory is that it could well be the unnatural delivery of exogenous thyroid hormone directly into the digestive system that triggered the histamine problem. Histamine is an ongoing issue for me, regardless of which thyroid meds I take (i.e. whether it's NDT, levo and/or lio, nothing improves). 😞

TiggerMe profile image
TiggerMeAmbassador in reply toRedApple

I think you are right, it's a side effect.... could be worse 🙃

GreenTealSeal_ profile image
GreenTealSeal_ in reply toRedApple

Just to say I’m having this problem too! Any kind of thyroid meds sends my histamine levels through the roof to the point I can’t function and am so uncomfortable and sore (itchy inflamed skin and eyes!) I’ve been trying antihistamines but they’re not doing it :(

GreenTealSeal_ profile image
GreenTealSeal_ in reply toRedApple

Just a thought and I know it isn’t recommended but would taking meds with food help maybe? May slow absorption a bit and ease the histamine response?

nightingale-56 profile image
nightingale-56 in reply toGreenTealSeal_

Hi GreenTealSeal_ , when I first started on Levothyroxine (1997) I was told to take mine directly after breakfast and tea. This, I did, for quite a few years, until things went wrong in 2010. All that time I was quite well., with no histamine problems at all.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tonightingale-56

Hello,

That’s interesting to hear. Were you still taking levo after food when things changed in 2010? Perhaps it was a shift in other hormones that caused the histamine issue?🤔

nightingale-56 profile image
nightingale-56 in reply toGreenTealSeal_

As my LD Son suffered at the same time and we both had Levothyroxine changed at the same time, I don't think it was anything to do with change of timing of Levothyroxine. This, I changed before 2010 and the change did not seem to make any difference to my blood levels. I think it was just the fact that it was made by a different company .

RedApple profile image
RedAppleAdministrator in reply toGreenTealSeal_

As I see it, the problem with taking levo with food, is the uncertainty of how much you may or may not absorb, according to the food you take it with. That's why we're advised to take it on an empty stomach, with a good time interval before eating.

The only way to achieve any sort of absorption consistency would be to take it with exactly the same food, in the same amount, every time. That in itself could be difficult, and make things particularly tricky if/when you're away from home.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toRedApple

Are you on t4 and t3 RedApple or just levo? Are you on HRT? (sorry not sure of your age!)

radd profile image
radd

TM,

I’m still a big believer in large amounts of Vit C and quercetin, and somewhere on your upwards trajectory you might find your histamine intolerance decreases or diminishes completely.

Mine started slowly with sneezing in the night after white wine and Chinese takeaway years ago. Then progressed to constant postnasal drip and certain foods making me feel wired and weird. Now it’s back to the 'white wine and chinese takeaway stage' which I now mainly avoid anyway.

I have no experience of kidney glandulars. I take NDT but the thought of taking other glandular organ makes me feel sick. I once tried some hypothalamus 🧠 suggested by a practitioner - cost a fortune and only lasted a few days before it went in the bin.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toradd

Interesting!! I struggle hugely with histamine but was hesitant to take quercetin as i thought it can worsen thyroid issues? 🤔

Did you find NDT was better for you than synthetics in regard to histamine reactions?

radd profile image
radd in reply toGreenTealSeal_

GTS,

Sorry, misleading as I meant high doses of Vit C (up to 3g daily), and normal supplemented doses of quercetin.

It is the flavonoids that risk interfering with thyroid function but taken in usual amounts I found quercetin fine. I eat a diet high in flavonoids anyway for the antioxidant effects as have iron-overload.

If you are interested there used to be available several Vit C and quercetin combos sups but I haven't taken them for a couple of years as my histamine levels are so much more controlled now.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toradd

Ah thank you! I will look those combo supps up!

Was NDT a little easier on your gut? I’ve found synthetics are too harsh cause me so much upset so I can’t take them :(

TiggerMe profile image
TiggerMeAmbassador in reply toradd

Hmm... I still do high dose Vit C but quercetin got shelved at some point... think I gave it to the kids when they were unwell and didn't replace 🤔 might add that back in and then risk an avocado or maybe an olive 🙃

Yours sound suspiciously like an MSG reaction?

radd profile image
radd in reply toTiggerMe

TE,

Exactly! MSG and sulphites are deadly to me . Wired so no sleep, drippy nose and post nasal drip for several days/weeks. Maybe a slight cough, fatigue and feeling just dreadful ☹️. Sooo not worth it.

radd profile image
radd in reply toGreenTealSeal_

GTS,

'Did you find NDT was better for you than synthetics in regard to histamine reactions?'

I can't remember a significant difference but I never had issues with any Levothyroxine brands as long as it was accompanied with a little T3 to enable enough conversion. My issues regarding meds were related to poor adrenal health intolerant of the T3 'bump' which enforced me to initially dose 3 times a day. Nowadays NDT allows me to dose just once a day and also medicate a lower amount of T3, but I suspect I would now be much more tolerant of synthetics should I ever try them again.

The elevated histamine has always been a low grade issue even before medicating thyroid meds and appears mainly food instigated. At one point I felt I couldn't eat anything without some sort of reaction and I was getting weird stuff happening like a sudden allergy to my watch strap, etc. My consultant termed it as low grade MCAS and any detox I've done regarding heavy metals and mould have been heavily supported to keep the immune system in a good direction. Now if I don't eat crap food or drink white wine I'm fine.

Plentiful research shows quercetin to reduce the release of excess histamine from mast cells, and help the cells become less sensitive to any further release of inflammatory chemicals. Once the vicious circle is broken things can repair. It is common for Hashi sufferers to experience extreme reactions because their immune system is already compromised. Hence I'm always banging on about reducing thyroids antibodies and controlling chronic inflammation.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toradd

Thank you it’s so interesting to hear your experience. I’m pleased you’re doing better with it all now.

Yes I can’t quote remember if my histamine issues were better on combo t4/t3 perhaps it’s time for a small trial to remind myself.

But before then I’m definitely going to get onto quercetin! I heard micronised progesterone can also be great at calming mast cells and histamine so hoping that helps me a bit too!

nightingale-56 profile image
nightingale-56 in reply toradd

Our dear Dr Peatfield was a firm believer in large doses of Vitamin C as well.

RedApple profile image
RedAppleAdministrator in reply toradd

'I’m still a big believer in large amounts of Vit C and quercetin'

Quercetin did nothing for me. And I'm intolerant of vitamin c, which is ascorbic acid. Can't even eat fresh oranges or drink more than a couple of mouthfuls of fresh orange juice. (Citrus intolerance).

radd profile image
radd in reply toRedApple

Oh no RA.

Have you found anything else that has helped elevated histamine levels?

RedApple profile image
RedAppleAdministrator in reply toradd

Sadly not, I've given up trying to 'cure it', as nothing seems to work in the long term. So just continue with avoidance of all the foods that trigger symptoms, or at best, trying not to fill the bucket too high 😧

GreenTealSeal_ profile image
GreenTealSeal_ in reply toRedApple

I’m sure I read somewhere that there are a few forms of vit C that are not ascorbic acid… they’re more expensive I believe but maybe worth a shot! May be worth a google.

radd profile image
radd in reply toGreenTealSeal_

Ester-C reduces oxalates.

TiggerMe profile image
TiggerMeAmbassador in reply toradd

I ought to try this then rather than buffered Vit C? Though pee is now pH6 😁

Have you tried these RedApple ?

GreenTealSeal_ profile image
GreenTealSeal_

Hi TiggerMe,

You probs already know all this but I thought I’d share a few things I’ve learnt so far…

Glutamine is apparently a good supp. for histamine and also Optibac probiotics (I’ve just started both)

Also vit C apparently slow/extended release is good for HIT.

Also I’m sure you already know that estrogen can increase histamine release and progesterone can calm this and upregulate DAO production. So maybe HRT needs adjusting?

I have found Utrogestan has calmed the histamine effects for me a bit but it’s all still early days for me and obvs I’m on HRT for slight different reasons!

Please do share anything you have success with and I hope you can have more variety in your diet soon! 💚

TiggerMe profile image
TiggerMeAmbassador in reply toGreenTealSeal_

Thanks GTS

Many things have seeped out of my brain as I only have a certain amount of capacity 🫠

I currently take 150mg of glutamine a day in an amino complex 🤷‍♀️How much do you take?

I'll be interested to hear how you get on with Optibac, I've tried a few but they are like rock fuel 😕

Buffered Vit C which keeps this very high

Just checked in with my sex hormones and all in a relatively happy place 🤷‍♀️

oestradiol around 397pmol/l <505 Post Menopausal (which is a little higher than last time)

progesterone sits at 4.37 <0.401 Post Menopausal

Hard to know if I'm more or less reactive to histamine as I avoid the triggers because I really hate the hangover from them 😳

GreenTealSeal_ profile image
GreenTealSeal_ in reply toTiggerMe

Ah no it sounds like you have a good plan/knowledge already! :)

I think I take 500mg glutamine but think you can take 1000mg max a day (defo worth a google check!)

I know there’s a lot online at the moment about ‘estrogen dominance’ and how that can exacerbate histamine issues. There are websites where you can work out your Estrogen and progesterone ratio but tbh I’m not even sure how useful that would be.

Tbh I’m v jealous of your estrogen levels…the highest mine have ever been are 300 and I’m only 33 🙃

TiggerMe profile image
TiggerMeAmbassador in reply toGreenTealSeal_

Well, I'm not so sure 🫠my oestradiol and testosterone levels have risen this time which is likely the DHEA kicking in, I've been taking for the last 15 months

This ratio thing rings a bell having previously been at 25 so last time I tweaked my progesterone dose up to around 25nmol/l with my oestradiol 290pmol/l giving a ratio of 102. I didn't feel any different and then I read some more scare stories about progesterone and dropped back.... I can get the ratio up by adding 100mg utrogestan vaginally once a week which at least avoids the liver along with my nightly 100mg orally 🤷‍♀️

omnicalculator.com/health/p...

GreenTealSeal_ profile image
GreenTealSeal_ in reply toTiggerMe

Ooh what are the scare stories about progesterone!? I’ve just started utro. this week @ 200mg!

TiggerMe profile image
TiggerMeAmbassador in reply toGreenTealSeal_

The usual breast cancer worries, but when you dig into it it's more about progestin (synthetic progesterone) rather than the body identical micronized utrogestan so it has a big headline but when you get to the conclusion it maybe has a 1% higher risk factor and all rather inconclusive.... some might call it click bait 😕

Hedgeree profile image
Hedgeree

Hi TiggerMe,

I've often wondered if there's a connection between histamine issues and sulphite sensitivity? As the symptoms you describe could also be attributed to sulphite intolerance? Sugar alcohols are another issue for me.

From my own experience some years back I managed to 'overdose' myself with sulphites. It was only in retrospect that I worked out what the problem was. I was very unwell, it had a terrible effect on my digestion (I was unable to control my bowels!😐) and a headache that lasted for three days. Lost a lot of weight as I was too frightened to eat anything for some time other than apples and organic lentils.

I mostly practice avoidance but sometimes it is difficult. Though I usually know when I've been 'sulphited' as I get a strange feeling of pressure across the bridge of my nose or may get a bit wheezy the next day even though I don't have asthma.

Not sure if this will help but Molybdenum supplements have been mentioned to me; I've not explored that option or even taken them myself but it may take you down another rabbit hole of exploration. You may have already researched it yourself?

I'm going to continue practicing avoidance for the time being at least. 😊

nightingale-56 profile image
nightingale-56 in reply toHedgeree

Thanks for reminding me about Molybdenum Hedgeree . I was told about it just before I did a Candida cleanse. Have just googled it and it does seem to be good for a lot of things. Sorry, can't do links.

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

Funny you mention molybdenum as I have certainly used that, tale end of last year through to middle of this year as the empty BioCare bottle remains as a reminder, so perhaps quercetin and molybdenum have played their roles in my general digestive improvement and I just haven't tested out the size of my histamine bucket recently? Though thinking about sulphur I often have stir fries laced with soya sauce... sushi created the highest spike in my blood sugar when testing!

Certainly white wine has always curled me up but I've not drunk for years, cider was my tipple which is higher in sulphites and histamine though this would have been pre levo

Symptoms of sulfite allergy or sensitivity include:

Wheezing.

Shortness of breath (dyspnea).

Chest tightness.

Coughing.

Sneezing.

Stuffy or runny nose.

Hives.

I wouldn't say I suffer from any of these... I can cope with a medicinal Cointreau but not Gin 🤮

Hedgeree profile image
Hedgeree in reply toTiggerMe

I tend to have digestive issues from sulphites, nausea, bad tum and headaches that lasts for a few days; not really respiratory. Generally feel rather unwell and jaded.

Think I may explore molybdenum properly 😊

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

Thankfully it's a cheap one! yournutritionshop.com/produ...

Hedgeree profile image
Hedgeree in reply toTiggerMe

Thanks ☺️

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

I'm thinking I should have more in the cupboard ready as I've not taken any for 3 months and just having a read up on where it is stored it seems to have a half life of several weeks 😬

Hedgeree profile image
Hedgeree in reply toTiggerMe

Oh no 🤔 Thanks Tigger Me. Very useful to know so I don't buy too much and end up wasting it.

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

A bottle last about 200-300 ish days, couldn't make out the use by it says see base and the bottle shows 56 ?

helvella profile image
helvellaAdministrator

The paper below seems quite interesting. But, because the paper itself is over five years old, also look down at papers which have cited it.

Food Intolerances.

Abstract

Food intolerances are estimated to affect up to 20% of the population but complete understanding of diagnosis and management is complicated, given presentation and non-immunological mechanisms associated vary greatly. This review aims to provide a scientific update on common food intolerances resulting in gastrointestinal and/or extra-intestinal symptoms. FODMAP sensitivity has strong evidence supporting its mechanisms of increased osmotic activity and fermentation with the resulting distention leading to symptoms in those with visceral hypersensitivity. For many of the other food intolerances reviewed including non-coeliac gluten/wheat sensitivity, food additives and bioactive food chemicals, the findings show that there is a shortage of reproducible well-designed double-blind, placebo-controlled studies, making understanding of the mechanisms, diagnosis and management difficult. Enzyme deficiencies have been proposed to result in other food sensitivities including low amine oxidase activity resulting in histamine intolerance and sucrase-isomaltase deficiency resulting in reduced tolerance to sugars and starch. Lack of reliable diagnostic biomarkers for all food intolerances result in an inability to target specific foods in the individual. As such, a trial-and-error approach is used, whereby suspected food constituents are reduced for a short-period and then re-challenged to assess response. Future studies should aim to identify biomarkers to predict response to dietary therapies.

Open access here:

europepmc.org/article/MED/3...

bluejourney profile image
bluejourney

I’m dealing with MCAS as well as hashis and SIBO/IMO, and I am sure they’re all interconnected. The most helpful thing I’ve found so far as a mast cell stabiliser is fresh pomegranate - not bottled juice, but the fresh fruit, and they’re delicious. (I don’t eat the seeds though). There’s also a supplement POMx, but I haven’t tried that yet. There’s been research on it lowering histamine and reducing cancer cells.

TiggerMe profile image
TiggerMeAmbassador in reply tobluejourney

Interesting stuff! Thanks for sharing

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